Friday, December 26, 2008

Before I become elderly myself, I must help my children to understand that my love for them does not depend upon my ability to perform acts of service for them. I have not understood this truth in my interactions with my mother.

"If you love me, then you will 'do' for me." That’s been my heart belief in relation to my mother; that her acts of service for me were one and the same with her love for me. Many of the battles I've fought with resentment toward Mom have come because of my difficulty accepting her inability to support me as she used to do; with gifts and acts of service. Resentment told me that her continued adoring looks and loving words have to do with her dependence on me; but in my heart I have really known this is not true. Mom loves me deeply and dependably. She doesn’t do one thing to help me with the burdens I carry—no housework, or cooking, or help with any of my responsibilities, in fact I now perform those duties for her. But she does love me. I haven’t been able to receive her love very well apart from her doing things for me. When the acts of service stopped, I stopped feeling loved.

During devotions the Lord directed my mind to this question: "Does your father still love you?"

My father's been dead for twelve years. My answer was quick and a little bit sullen, "My father is asleep in death."

The immediate reply came in the form of another question, "Do you love your children when you are asleep?"

Without hesitation I replied, "Completely and unreservedly."

And then I knew that of course my father, who is at home with Jesus, still loves me. Of course he does. He loved me in life. I never had doubt of this fact. And now that in my perception he is asleep in the silence of death, he is yet very much alive in Christ--of course he loves me still.

Yet I have harbored an ongoing feeling that I am bereaved. My loneliness and grief do not bear the weight of close examination; my father loves me still and my mother also loves me. “Faith, hope, and love abide…” For all eternity this love they have for me will remain. And so in what way do I consider myself to suffer a deficit?

Love often expresses itself through actions, but when no more actions are possible because of illness or death, love yet remains. Love itself is powerful and protective apart from any act of service, and I have been well loved.

Scripture: "Brothers, we do not want you to be ignorant about those who fall asleep, or to grieve like the rest of men, who have no hope. 14We believe that Jesus died and rose again and so we believe that God will bring with Jesus those who have fallen asleep in him" (1 Thessalonians 4:13-14).

"And now these three remain: faith, hope and love. But the greatest of these is love" (1 Corinthians 13:13).

Tuesday, December 16, 2008

Since Mom's lived with us, I have often felt irritation with her over the way she speaks to me when I'm performing some service or another for her. There is a tone one uses when speaking to waitresses and store clerks-- polite but certainly not the familiar tone used with family members--and I have been offended when my mother used that tone with me.

Her reply stopped me in my tracks. My pre-Alzheimer's mother would have been well aware that I've known how she likes her coffee since I was a toddler. I suddenly understood why Mom responds to me as she does--not always knowing where she is or why, not always certain whether this harried, middle aged woman who cares for her is her daughter or some hired person, she takes her cues from me. And so when I offer to bring her coffee she quickly assumes I'm her hired help!

Mom masks her confusions so well and she still looks and sounds like the mother I've always known, and so I had not recognized the degree to which she needs me to help her to stay oriented to her surroundings. Just a small shift in my words and actions can solve this problem that has bothered me for the past four years; when I offer Mom a service I need to cue her as to who I am in order to clarify that it is her daughter offering to help her, not a stranger.

Today I said, "Mom, I'm going to get myself a cup of coffee, want me to bring you one?"

Friday, December 12, 2008

I haven't posted an entry here for over a month, since the day I found that the future of the book I've written is uncertain. My book, God, Mom, Alzheimer's and Me, contains not just a record of the emotional and spiritual journey that I went through as I became my mother's caregiver, but also the inspired words of guidance that the Lord so graciously provided Mom and me during that terrible time following her diagnosis. I put so much of who I am in the Lord into the manuscript that the threat of losing it feels to my heart like losing record of my ministry. Writing a book can be compared to a long and arduous labor to bring forth a child, and I feel that I've completed the labor but have no child to show for my efforts.

The Scripture that's been going round my head since this analogy of labor and childbirth first occurred to me regarding my book is this: "God is not a man, that he should lie, nor a son of man, that he should change his mind. Does he speak and then not act? Does he promise and not fulfill" (Numbers 23:18-20). This passage goes on to say that when God has ordained blessing, then blessing will arrive. "No one can deliver out of God's hand" (Isaiah 43:13).

I believe that I will have the blessing of seeing the heartache Mom and I have endured transformed into blessing as we see the record of our travail bring strength and encouragement to others; I do believe that the book will go to press and that it will reach those who need it.

It has been nearly five years since Mom's diagnosis and incredibly, she continues to linger at the mid stages of Alzheimer's. She is still able to take care of her own basic needs and is mobile, needing no help to transfer from bed to chair to bathroom. She is lucid in each moment that she is in, although she has no memory of moments immediately past, and so she needs my support to know when it is time to bathe, dress, and eat (she doesn't know if she's done these things already or not). I don't know how she is able to enjoy reading, but she apparently does. She reads the same books over and over with apparent enjoyment.

The ongoing grief is difficult but when I abide in the Lord I am fine. The instant I take my eyes away from Him I am in trouble, like Peter when he took his eyes off the Lord and found himself sinking in the waves.

Book or no book, I praise God, who has been our help. He has been so very gracious to us.

Monday, November 10, 2008

If all goes as promised, my book God, Mom, Alzheimer's, and Me will be published sometime next summer by Bridge-Logos. It is a book of devotions and practical advice for those who care for loved ones with dementia.

The book began when an editor saw this blog and encouraged me to write a book. Her Catholic publishing company did not accept the finished manuscript, dismissing it as being "too Protestant!" This did not upset me unduly--because you see, I am indeed Protestant! I listed the manuscript with an online Christian manuscript service, and Harvest House publishers expressed interest. But Bridge-Logos responded almost immediately with an offer of a contract, and so I signed. The editing process was painstaking and the publishing date has been postponed from fall 2008 to summer 2009; but until today I had confidence that the book would indeed be published.

However, the economic crisis has had far reaching effects. My editor wrote to me today and asked me to partner with Bridge-Logos by purchasing 500 copies of my book.

F i v e H u n d r e d copies. The UPS man will not be happy. And where will I put five hundred books? It is sure to be a little book, and just a paperback; but still. I was picturing them stacked to the ceiling in the garage until I remembered--we don't have a garage, only a carport!

What am I going to do???

I'm going to trust the Lord, that's what.

While I wrote God, Mom, Alzheimer's and Me a small printed sign hung above my word processor. It read, "Soli Deo Gloria." This is Latin for "to God alone be the Glory." I repeated this phrase as a daily prayer as I wrote of the struggles of caregiving and of God's faithfulness to my mother and me.

I wrote this book for Jesus, and it is true that my prayer is for it to help others who must fight the battles of resentment, grief, and weariness that caregiving brings. But even if no one ever reads my book, I've given the Lord a gift in its writing and that is blessing enough. To be able to give to Him! Yes!!

To God alone be the glory!****Oh. By the way. If you'd like to reserve an advance copy of a great little devotional entitled God, Mom, Alzheimer's, and Me, I'm pretty sure I'll be able to find one for you. Sometime next summer. Probably.

Scripture: "...I said, 'I have labored to no purpose; I have spent my strength in vain and for nothing. yet what is due me is in the Lord’s hand, and my reward is with him'"(Isaiah 49:4).

Saturday, November 8, 2008

If you are an Alzheimer's caregiver, I urge you to frequent the Alzheimer's Association's web site at www.alz.org. When Mom was first diagnosed I was able to use this site to locate a chapter of the Alzheimer's Association within 20 miles of my home. The information at the web site along with the meetings I attended provided me invaluable information as I began life as a caregiver.

One day I was scanning the articles at alz.org and found an offer of a free resource. I filled out the online form and a few weeks later received football coach Frank Broyles' Playbook for Alzheimer's Caregivers.The book came with a pocket sized flipbook entitled Pocket Book of Tips and Strategies.

Tonight I have been reviewing Coach Broyles' strategies and am convicted by one characteristic that shines through his words of advice--kindness. His love and respect for his wife expresses itself in a desire to protect her emotionally. "Pay attention to what she is trying to tell you," he says. "Give her lots of time to finish what she is trying to say...Don't argue with her...Tell her each car's seat belt is different if she is having trouble putting it on."

Tears of remorse come to my eyes as I quote these words, because when I contrast my own behaviors with the recommended strategies I fall so short. My mother always has difficulty fastening her seatbelt and I have let her struggle with it as I hurry to begin our trip. My disgusted silence is worse than unloving, it is cruel. Mom needs me to be her advocate and her helper. She needs my prayers and my support. So long as I nurture remnants of resentment over our role reversal, how can I be Christlike in my behavior toward her?

Today, I took my mom to the beauty shop and as usual, she struggled to fasten her seatbelt. I looked over and said, "You know Mom, every car has a different kind of seatbelt and it can be a real puzzle to figure them all out." Thanks to the Lord and to Coach Broyles, maybe there's hope for me yet!

Scripture: "And the Lord's servant must not quarrel; instead, he must be kind...able to teach, not resentful" (2 Timothy 2:24).

Sunday, October 26, 2008

Mom was diagnosed with Alzheimer's disease nearly five years ago, and is now functioning at a higher level cognitively than she was at the time of her diagnosis. At that time, my research led me to the expectation that she would exhibit a slow but steady decline, and this has not yet happened.

Elsewhere in these entries I've described in detail the medications and the environmental factors that I believe have helped Mom to hold her own and even to improve. To review briefly, Mom takes the Alzheimer's drugs Aricept and Namenda along with an antidepressant. She receives a cholesterol lowering medication that I think may have helped her cognitively as well, and I give her several supplements including fish oil, a daily multivitamin, calcium, and lutein. She lives in a room with southern exposure, receives daily exercise, and is provided music and books. Most importantly, she has enjoyed a lifetime walk with the Lord and her faith has not wavered.

Tonight while I was in prayer, the thought came to me that the time my mother has lived with us has been more for me than it has been for her. The Lord has provided Mom the comfort that comes from resting in Him during this time, and when she dies she will rest in Him still. He has allowed her this time of peace while my heart is being strengthened to bear her loss, but I haven't always understood or accepted that this long goodbye is a gift. Today I am praying to be more appreciative of this gift of time with my mom.

Tuesday, October 14, 2008

When I began taking care of Mom I congratulated myself on my ability to hold my tongue when she snipped at me. I felt quite noble when her occasional snide comments fell into a pool of my determined silence. However, the Lord made it clear to me that if I am to follow His example, some action must be taken. A reply that expresses understanding of Mom's frustration or my arms going around her for a hug are examples of loving responses.

My mother, regardless of the state of her ability to remember, reads my moods quite accurately. She is well aware that my silences are not loving. Today my prayer is for the ability to respond in love toward Mom even when she is grouchy with me.

Monday, September 22, 2008

Because those of you who are caregivers might look to this site for inspiration and help, I feel a responsibility to be honest and not to paint myself as a paragon of caregiving virtue. It is an ongoing struggle to provide for my mother's emotional needs, and I confess that I haven't been doing a very good job.

Caregiving is a lonely enterprise. No matter how well supported one is (and I have excellent support from my husband and daughter), the primary caregiver tends to bear the lion's share of the emotional burdens of caregiving. This is probably because the main caregiver is often the one who is most closely related to the dementia patient. In an effort to protect the heart, there is a tendency to distance oneself emotionally. And, once we begin to build walls around our hearts, it isn't possible to raise them and lower them at will. I've ended up feeling isolated from friends and family alike. Even when I'm in good company I feel that strange sense of distance. Just when I long the most for comforting arms and kind words, I don't seem to be able to receive them. It's as though they bounce off the bubble of protection I've attempted to wrap around myself.

The loneliness of taking care of someone you love comes from the fact grief itself is a lonely emotion. How do people do it without the Lord? I know that though I may feel alone, that God is with me.

Following this entry I've placed a link to a popular praise and worship song that's taken from the 23rd Psalm. What a blessing it is to know that I'm not ever truly alone even as I walk through the valley of my mother's death. Matt Redman's "Oh, No, You Never Let Go"

Friday, August 29, 2008

A good portion of the conflicts that occur between my mother and I have their roots in our different perspectives and lack of adequate communication. For example, the other night I offered to hold Mother's fruit cup while she swallowed some pills. She thought I was telling her to give up the fruit cup for good and, not being ready to bid it adieu, she took exception. A misunderstanding ensued as we both got snippy with one another.

I was reading Melody's blog this afternoon, and as she related the story of her frightening brush with wildlife in an unexpected location, I was reminded of another miscommunciation that took place between my mother and myself over thirty years ago.

I was 16 years old and myopic. My face was positioned one inch from the bathroom mirror as I applied black eyeliner and several layers of mascara (it was the 70's). I turned to reach for my contact lenses and saw a movement on the floor. "A tissue fluttering in the air from the floor vent," I thought. I bent down close to examine the object. It was a palm sized wolf spider who, threatened by twin black lashed eyes that must have resembled intruders in its territory, leapt toward my face. I screamed, "SPIDER!!!!!!!!"

My mother, asleep in the next room, thought I'd said, "FIRE!!!" and came tearing out of her bedroom screaming, "WHERE'S the FIRE??????" This misunderstanding continued at top volume for quite a long time and ended with both of us feeling that the other did not have proper compassion for our respective traumas.

This was probably an accurate evaluation, because truth be told, I'm still miffed with Mama for her lack of empathy that day. And, she still speaks ruefully of the time I caused her to believe that her three bedroom ranch was going up in flames.

Saturday, August 16, 2008

Last night I watched with the rest of the world as Michael Phelps swam in the 100 meter butterfly for his seventh Olympic gold medal. Phelps wisely chose to take one last frantic, chopping stroke at the end of the race while his opponent, who was leading the race until the last hundredth of a second, glided smoothly into the boards. As the results appeared showing that Phelps had won, the camera panned to his mother's face. With one wide-eyed look of amazement that lady slid right down to the floor, overwhelmed with emotion over her son's victory.

As Phelps' mother reappeared, wiping away tears of joy, I experienced a flash of grief over my own loss of this kind of regard. There is no one left on this planet who is my cheerleader in exactly the same way a mother can be. Of course I've never won an Olympic medal, but as she shared in my small victories I've seen the same joy on my mother's face as Michael Phelps' mother displayed. As children of parents with Alzheimer's disease, we find to our dismay and grief that we are no longer the recipients of that irreplaceable focus of parental attention. There is no longer any human being who cares more about our achievements or heartaches than they care for their own.

If we live long enough we inevitably accumulate a body of grief and suffering. Grief over loss of parents is compounded when it comes as a final, devastating layer to earlier heart blows of loss. Middle-aged caregivers of aging parents are particularly vulnerable, often dealing simultaneously with other difficult life passages such as raising teenagers, giving children in marriage, and becoming grandparents.

Apart from the Lord, sorrows of great magnitude can be survived only through avoidance tactics that provide in-the-moment relief but no lasting solace. Analysis may reveal with fair accuracy the nature of the problem, but can offer no prescription that will provide true relief.

The other night I dreamed that I was a baby alone in a car, pushing buttons on the radio. In my dream state I was able to turn the radio off and on, but I couldn't switch stations, and I kept fruitlessly attempting to do so. As I woke up I smiled as the meaning of the dream became apparent to me. When I spend too much time analyzing my own grief (as in the preceding paragraphs), I'm like a baby playing with controls she cannot understand, pushing random buttons.I don’t know which buttons to push and lack the ability to develop some kind of a logical, systematic technique for trying all combinations of button pushing.My efforts become random, my resolve to formulate some sort of a self-help program crumbles. And yes, I need to be content with the ability to, as the old gospel song says, turn the radio on.

I need to open lines of communication between myself and the Lord with a willingness to release my broken heart to Him, and to quit pushing all those other buttons.I'll never find comfort through self-examination. The more completely I understand the exact composition of my own sorrows, the more discouraged I become.

Scripture: "It was not by their sword that they won the land, nor did their arm bring them victory; it was your right hand, your arm, and the light of your face, for you loved them" (Psalm 44:3).

Saturday, August 2, 2008

A recent newsletter from the Alzheimer's Association told of a newly recognized condition called caregiver's syndrome. It said that exhaustion accompanied by resentment and anger were warning signs (ah oh, I thought) and that people with this condition run higher risk of diabetes, stroke, and death (YIKES).

The statement that really caught my eye said that caregivers who suffer this set of ills may take on some of the characteristics of those for whom they care, for example, someone who cares for an Alzheimer's patient may find herself becoming more forgetful (uh, what was I saying?? Oh, yes)....This portion of the article gave me a jolt because earlier that very day I'd written the following sentence in my journal: I feel resentful toward Mom but am imitating her lifestyle choices, the ones that contributed to her Alzheimer’s.

In recent months I've been diagnosed with low thyroid, high cholesterol, and most recently, lower back pain that has defied a summer's efforts to remedy.

I've begun and failed to follow through with program after program of self-improvement. Becoming a grandmother this spring, an event that I perceive to have been astoundingly joyous and incredibly precious, nevertheless impacted my health negatively. I recalled reading that any emotional life passage can exacerbate Alzheimer's symptoms in those so inclined.

I am tired and discouraged but I am not without hope. No matter what state I'm in, I rest in the assurance that I won't fall apart because I am not the one who is in charge of holding me together: "He is before all things, and in Him all things hold together," (Colossians 1:7). I do not have to analyze how I have gotten into the state I'm in because I can't do it. I'm stuck on this particular point on my time line, and the Lord is the only One who is able to inhabit my past and my future, as well as my present.

I'm going to walk forward in faith, because "...he knows the way that I take; when he has tested me, I will come forth as gold " (Job 23:10).

Monday, July 28, 2008

One of the most difficult adjustments I've had to make as I've become my mother's caregiver has to do with a relatively minor matter. I have low tolerance for what I call Mom's endless loops. She will get stuck on one phrase or story and repeat it every few minutes throughout an entire afternoon. I am not mature in the way I handle this. I generally say brightly, "Well, Mom, I've got to go finish up cleaning that oven," or some other such implausible excuse--and I make a run for it.

When Mom's endless loop has to do with some subject that is irritating or slightly inappropriate, it is all the more painful. For example, any endless loop having to do with bodily functions is particularly hard for me to bear. And tonight Mom's subject was swearing. As I washed and set her hair (and this task obligated me to stay in Mom's vicinity rather than taking my usual coward's way out) Mom told me about the fact that she had once been guilty of using a few swear words. In the record that follows I've deleted the actual words themselves so that the blog analysts won't censor me: Mom kept saying, "I would occasionally say words like **** and ####, and very rarely %%%%!"

I tried quoting Scripture to no avail. "The Bible says, 'Let no unwholesome talk come out of your mouth but only that which is useful for building others up," I said, misquoting Ephesians 4:29.

"Well how nice," said Mom, not meaning it. And then scarcely drawing a breath she said, "I would occasionally say words like *****...." And so on. And on and on and on.

I occasionally repeat stories to my children with a sense that I've told the same story many times before, but liking the sound of my own voice and the point of my old story I tell it again.

Somebody just shoot me.

Not really.

Lord grant my children tolerance, long suffering, perseverance, and love, lots of love. And while you're at it Lord, better give me a helping of each of those as well.

Scripture: "Be completely humble and gentle; be patient, bearing with one another in love" (Ephesians 4:2).

"Bear with each other and forgive whatever grievances you may have against one another. Forgive as the Lord forgave you" (Colossians 3:13).

Sunday, July 27, 2008

I have just exchanged emails with a dear young woman who is struggling with the pain of losing her grandmother to Alzheimer's disease. She thanked me for sharing my caregiving experiences, and spoke of the fact that she was not certain that her grandmother recognized her any longer. I made the following response to her:

"I'm so sorry for your grief, my friend. The Scripture that comes to mind is Isaiah 49:15: "Can a mother forget the baby at her breast and have no compassion on the child she has borne? Though she may forget, I will not forget you!"

"God is very wise. For some of us, a sudden death of a loved one would impact the emotions and the mind too harshly. The trauma would be too much. I've come to understand that the long goodbye of Alzheimer's is giving me time to adjust to the loss of the supportive love my Mom gave me, time to transition to a deeper dependence on the One who will never forget me.

"God bless you in this journey."

And may the Lord bless each person who visits this site looking for balm for the heart that aches because someone they love can no longer remember. God will not forget you.

Thursday, July 17, 2008

There is an ongoing difficulty in interacting with a loved one whose capabilities have been diminished by dementia. I've addressed this problem in my previous entry to this blog; Mom is not where she once was, and I continue to look for her where she was and not where she now is!

Behaviors that would be labeled lazy or even dishonest in the general population must be viewed as being symptoms of the disease process.

For example, if I respond to Mom's reluctance to get out of her chair as though she were being lazy, I am judging her based upon behaviors that are symptomatic, not causal. If I look beneath the surface behaviors I find that confusion, uncertainty, and the inability to logic and reason are behind her need to stay in a place that is familiar and comfortable. She can still reach for the Kleenex box or the cold drink on her chair side table, she can adjust the TV volume control with her remote; in this small world she knows how to function.

Another behavior that caused me at first to either correct or chastise Mom is her tendency to fill in gaps in her memory with creative explanations based on the long term memories that are still intact. For example, if her mini-blinds are clean, she reasons that she's the one who must have dusted them, and she recently told her granddaughter that she just uses a damp cloth and runs it over the blinds once a week or so. To a caregiver, a story like this is offensive on a couple of levels, the first being that I'M the one who dusts the darned mini-blinds and would like to have credit given where credit is due! The second is an upset over the fact that this woman who was the most honest person imaginable, is now apparently making things up.

Mom is making sense of her world the best she can. It is my job to keep quiet and to allow her the dignity of creating order out of the increasing number of confusing facts by which she finds herself surrounded.

Once again, Mom's doing a good job with the circumstances in which she finds herself. And, once again it's the caregiver is the one who needs an attitude adjustment.

Saturday, July 12, 2008

I recently did some cleaning and organizing in our kitchen and decided that it would be more efficient to keep the aluminum foil and plastic wrap in a different cupboard than in the location they've happily resided for the past six or eight years. I'm sorry to say that neither my husband nor I are capable of incorporating this new information into our respective memory banks. He's wearing a martyred, "Is nothing sacred?" demeanor while I stubbornly insist that the new system WILL work...once we get used to it.

This reminded me of another area of my life in which I continue to struggle to adapt. Although my mother has lived with us for four years and struggled with the beginning stages of Alzheimer's disease for several years prior to that, I am proving myself to be a slow learner when it comes to understanding and making allowance for her diminishing capacity to think and reason. For nearly fifty years of my lifetime prior to my mother's diagnosis, she was capable, clear thinking, and independent. Although I know better, I still sometimes expect her to be able function as she once did. She looks and sounds like the mother I've always known, and she puts up a good front. But incidents like the ones I've related below reveal her struggle to make sense of her world by utilizing the memories that remain in conjunction with the observations she makes in the moment she's in.

This afternoon Mom said, "Now, am I right that you are a teacher, and that this is summer, so you have some time off?" (I have been a teacher since 1978. Mom helped in my various classrooms for years.) I acted put-off by her comment, although the reasoning process Mom used to arrive at this question was really quite sophisticated for someone in the mid-stages of Alzheimer's disease. She had checked her white board for the date and had utilized her long-term memory of the fact that I had once been a teacher.

Awhile later she said, "Now, tell me why I'm here, in this room. Is it just because I'm old?" Once again, I was not particularly supportive or reassuring. I answered her in a perfunctory way and went about my business.

Shame on me when I become short tempered with Mom because she does not comprehend some situation or conversation as I assume that she should have been able to do. She's not where she once was, and I am the one who must adapt.

Sunday, April 27, 2008

I can't emphasize enough the importance of medication for Alzheimer's patients.

I've written about Aricept at http://www.wearejustfine.blogspot.com today. The combination of Aricept, Namenda, and an antidepressant (Prozac) worked a near miracle for my mother, and I always want to spread that news. When she came to live with us I also gave attention to her diet and to daily exercise--but neither of these are perfect in consistency or in quality! I have to think that those Alzheimer's drugs (brought to us by God's grace and through His provision for us) are largely responsible for the fact that, against all predictions, Mom has actually shown improvement in her level of processing over the past four years.

Our wonderful nurse practitioner, Diane, has told us that medication is often stopped when Alzheimer's patients are placed in nursing homes. This doesn't make sense to me since studies have proven that people who receive medication are so much easier to care for and enjoy a higher quality of life. Diane said, "If your mom goes to a nursing home be sure that she continues to receive her Alzheimer's medications." I plan to do that if and when the time comes, but for now Mom's level of functioning continues to allow us to care for her at home.

Tuesday, April 8, 2008

When all goes as planned, I take Mom for two short walks a day. At around 10:00 a.m., I coax her out of doors for our first excursion of the day. Two times around our big circle drive and back to the house takes about ten minutes, and leaves Mom breathing hard. Mission accomplished!

When I get home from work around 5:00 p.m. we head out for our second walk. Maybe it's because I'm weary by this time of the day, but I always find it more difficult to stay in step with Mom in the evening. It's important that I time my steps to match hers. She leans on my arm heavily, and if we get out of synch both of us have trouble keeping our balance.

Mom is bent, and looks down as we walk. And so I must guide her, or we begin to list from side to side and once again balance becomes an issue. It's difficult for Mom to keep from attempting to stride out ahead to lead the way; perhaps because in our former life she was my guide rather than vice versa. Or, perhaps she is just anxious to get back to the comfort of her chair!

For whatever reasons, I've noticed that when I match my steps to hers and she accepts my taking the lead to plot our course, our walks go much more smoothly.

Isn't that a nice illustration of the caregiver/patient relationship? The caregiver plots the course but must allow the patient to set the pace. And for her part, the patient must be able to accept guidance.

It is my difficulty with allowing Mom to set the pace for the activities of her day that causes most of the small tensions that occur between us. My requests of her--to wash her hands for lunch, or to come to the door to put on her coat for a walk for example--take her more time to accomplish than my "hurry-up" mindset can tolerate with grace. This illustration of the importance of allowing Mom to set the pace was a nice reminder for me. I need to allow her the dignity of moving at her own rate as she accepts the guidance I offer.

Saturday, April 5, 2008

While clenching my teeth and biting my tongue this morning, I had a flash of insight; maybe because I was multitasking and managed to pray in conjunction with my tooth grinding/tongue holding exercise.

Mother had asked me to get her a cup of coffee. If I had a true servant's heart, such a request wouldn't annoy me, would it?

One of the most difficult aspects of caring for an elderly parent has to do with the reversal of past roles. Mama used to meet my needs, now I'm supposed to meet hers; and this is an ongoing heartache for an only child who was once the apple of her mother's eye. I think I'm still the apple of her eye, but for different reasons. She calls me, "My Linda," and you'd think I'd smile when she says that. I do not smile. The little voice in my head, the one you shouldn't listen to and probably won't hear if you are rightly aligned with the Lord says, "She doesn't give a flying fig about your well being. She only cares for you because of what you do for her."

Back to the flash of insight. It came to me quite clearly, not quite in time to prevent me from grimacing in Mom's general direction but it did cause the sharp retort that had been threatening to spill out of my mouth to be silenced.

The ability to ask for help outlasts the ability to "do" for oneself. Put yourself in your mother's place, and imagine that your thinking processes are compromised as you know hers to be. Getting a cup of coffee is a complex task. You must stand up. While occupied with the mechanics of standing you are very likely to forget why it was that you stood up to begin with. If you do remember your task you then must orient yourself to the room, remember where the coffeepot is kept, and navigate your way across the room. Once having arrived at your goal you must procure a cup, remove the pot from the burner and pour the hot liquid. But wait, it isn't hot. You must use the microwave. The coffeepot won't fit back into its slot and you can't see what is wrong so you leave it stuck at an angle. How to work the knobs on the microwave? And when all of these maneuvers are successful, your mother must then negotiate her walker, a cup of hot liquid and her uncertain balance to get back to her chair. When you respond negatively to her requests for help, you take from her the dignity of being able to adjust to her limited capacity to function by learning a new way to get what she needs--she asks! Behaviors that in the general population would be labeled as "lazy" are, in the Alzheimer's patient, coping strategies developed to adjust to a lowered level of functioning. Your mother is doing a good job. You, not so much.

In our former lives, my mother rarely asked me to "do" for her. I have clear memories of her jumping out of her chair to see to my comfort, to make me a sandwich or to mix up the special frosting I used to like to eat between graham crackers. And if you think these are childhood memories--no. We retained our mom-as-caregiver/me-as-child roles right up to the time of her diagnosis four years ago. So you can imagine, it was quite a shock for me to learn to be a caregiver. I guess most adult children have difficulty seeing the new limitations of parents who have become elderly, and I had somehow managed to judge my mother as a caregiver who was failing to perform her job well. This, despite the rather obvious fact that she was both physically and mentally incapacitated.

I'll get it Lord, I will. Thank You for helping me. And forgive me for my failures to be Christlike in my caregiving of Mom.

Friday, March 21, 2008

I’ve always found the words, “Here I am,” springing to my lips as soon as I come to the Lord in prayer each day. When we say, “Here I am, send me,” God puts us to work in the fields of His choice.For years I longed to be of “real” use to the Lord, but I have learned that the true spiritual life of discipline and growth takes place in the valleys of everyday life.

My ministries over the years have been teaching, parenting, and most recently caregiving.Many times I longed for an adrenalin rush of excitement and risk, for the emotional highs of proclaiming the Gospel to the lost, for the soaring compassion toward the heart rending pathos of the needy, and for the sense of being used for noble purposes in the Kingdom.I thrilled to a few mountaintop experiences in the Lord and longed to stay on the mountaintop.I was like a gymnast who loves competition but doesn’t understand that the daily drudge of preparation is 99% of the event.Without the preparation time in the valley, there can be no mountaintop.And though the thrill of exciting moments in the Lord is sweet, it is also very rare.Our spiritual and physical lives here on Earth consist mainly of valleys and of faith in things unseen.Walking through the valley while holding to the vision of usefulness we received on the mountaintop seems difficult and even impossible until we look at our Savior’s face.His eyes hold amusement, His arms enfold us in wonderful love; He says, “This is the way, walk in it,” and “Come unto Me.”

Apart from a daily refocusing upon the goodness of our Savior’s grace, upon the Father’s love and the Spirit’s guidance, it becomes a constant challenge to trust that the Lord has the big picture and that His love intends us good and not harm.Days, weeks, months, and years are just a drop in the eternal bucket of God’s wisdom and knowledge.

Father, let the compass of my heart point to You and You alone; not on service, not on ideas of how I may be of use in the Kingdom but upon Christ and Christ alone.

Scripture: Then I heard the voice of the Lord saying, "Whom shall I send? And who will go for us?" And I said, "Here am I. Send me!" (Isaiah 6:8).

Friday, March 14, 2008

Mom has had a good week, but for one incident that scared the living daylights out of me. And, as she explained to me, it wasn't pleasant for her either!

Last week's news stories were full of the trauma suffered by several rural people who live about sixty miles from us, near a small town. Although they were not physically harmed, intruders broke into their homes, tied them up, and ransacked their houses. I travel to that nearby town often because my Reading Recovery continuing education group meets there every 6 weeks, and so I know several people who live there. Last Tuesday night I'd gone to sleep thinking about those home invasions. On Wednesday morning I awakened very early as often happens to me, and I came downstairs to do my devotions. About 6:00 a.m. I decided to try to sleep awhile longer and went back upstairs. I'd just settled back into bed and was drifting off to sleep when I heard Mom screaming through the baby monitor. Her voice was terrified and she was calling on the name of the Lord. I immediately knew that she was either being attacked or thought she was being attacked. Either way I knew I didn't want to go plunging into her room alone. I levitated from bed yelling to John to come with me quickly because Mom was screaming. I ran full tilt to her door and turned to find that John was not behind me. I ran back up the stairs and John had just managed to sit up and was searching for his slippers! I yelled again for him to come and ran back downstairs, and this time could hear him coming along behind but not fast enough for me. I went ahead and ran into Mom's room. No intruders in sight, and she looked calm. I asked her if she was alright.

"Oh, yes, I just had a really terrible dream," she answered.

Like a mother whose child has frightened her, I sounded a little bit short as I replied, "Well, you sure scared me."

She drew herself up and replied huffily, "Well, Linda, the nightmare was not pleasant for ME!" Both she and the cat seemed affronted by my attitude.

I retreated back to our part of the house to find my husband slouched dozily in the overstuffed chair in our living room. I'm not sure that he'd ever really opened his eyes. "Everything alright?" he inquired. I was weak-kneed from the adrenalin rush and a little bit tight lipped over his refusal to get frightened along with me and kept my answer short.

"Just a bad dream," I said.

Back upstairs John began to snore almost immediately while I clutched the covers up under my chin and stared wide-eyed at the ceiling. And I swear I could hear Mother's gentle snores over the monitor.

Wednesday, March 12, 2008

When I turned fifty the American Association of Retired Persons knew. I don't know how they knew and I've pondered this. Did my name pop up on a Google search under the heading, "People who are turning 50 this year and are gullible?" Whatever method their marketing department used to locate me, they struck gold. The very day I received my special invitation to join AARP my check was forwarded to them by return mail, helped by the fact that the sample issue they sent had Robert Redford's photo on the front.

Lately I've noticed that a new buzzword has appeared in my AARP magazine. Every issue of late has included the term "sandwich generation," referring to people who are caring for children or grandchildren while at the same time filling the role of caregiver for elderly parents. I hadn't thought much about this in relation to myself until one day last week. On Friday morning I found myself clutching my slippery(and unhappy) baby grandson as I demonstrated for my daughter how to wash an infant's hair. And on Friday evening I found myself clutching my slippery (and unhappy) elderly mother as I demonstrated for her the necessity of an occasional all-over bath. Somewhere in the middle of my interactions with Mom I realized that my activities on that Friday served as a graphic illustration of what it means to be a member of the sandwich generation.

This morning my daughter needed a babysitter and as I was on my way out the door I paused and looked back into the open door of our downstairs bathroom. For a long time I've been meaning to paint the walls and to replace the peeling grout in the shower, but since Mom moved in with us I've not done my usual home upkeep projects. I was saved from feeling resentment over having no time for leisure activities (such as scraping grout) when I remembered a line from a poem that comforted me many times when my children were infants, "...quiet down cobwebs, dust go to sleep, I'm rocking my baby, and babies don't keep." There will always be home improvement projects, but there will not always be babies to hold. And I won't always have my mother with me.

I don't mind being a member of the sandwich generation. Sandwiched between two generations of people who love you is a pretty cozy place to be.

Wednesday, February 20, 2008

Once again I've been struggling with resentment toward my mother. This is just an ongoing battle. I thought that after awhile I'd adapt to the fact that she is oblivious to all of my services for her. In fact, although she is usually polite, her raised eyebrows when I flounce through with a garbage bag or a load of laundry makes it clear that she feels that the service in this hotel she's staying in isn't quite up to par.

This morning I was in the shower when a disquieting thought came.

"You could be out of a job."

Just that. And the meaning was clear to me. God loves my mother. He cares for her and as Mom's caregiver I am to represent the Lord's love to her. God has blessed me so richly through my mother's presence in our home...there are trials, to be sure, but he strengthens me for them. And as a direct result of my mother's Alzheiemer's disease I've been able to cut my work schedule as a teacher to half time (which was a desire of my heart), I was able to build a lovely addition to our home that for now serves as my mother's living quarters, and I am soon to be a published author as the devotional I wrote for caregivers will be in print sometime this year. God brings blessings from ashes and He has provided for me abundantly as I have walked through the Valley of the Shadow of the time when I will have to tell my mother goodbye.

The movie "The Bishop's Wife" came to mind; the original version with Loretta Young, David Niven, and Cary Grant. In this movie there a scene wherein the angel questions the bishop, saying, "The cathedral must be built? Or, your wife must be happy. Which is it?"

The cathedral of my hopes and dreams for ministry and achievement doesn't mean very much to the Lord. He loves my mother and His desire is for her to be happy. If I don't align myself with His love in my service to my mother, I could well lose my job. I am not irreplaceable.And it is a job that, unexpectedly, I've come to treasure because I do love my mother and I love the Lord Whose kindness to both my mother and to me during this time has been so abundantly rich.

Tuesday, January 22, 2008

I am ashamed to admit that I am a person who does not like to share her food. I don't want you to look at my plate. I don't want you to touch my plate. And I've been known to slap the hand of someone who has the temerity to reach for a French fry from my own personal kiddy meal sized portion. My husband knows this about me and, being a person who enjoys teasing his wife, he always attempts to steal my food. After all, it is just plain entertaining to see someone who spends a good deal of her time reading the Bible and praying totally lose it over a trans fat laden morsel of overcooked potato.

The Lord has not been impressed with my parsimonious attitude about what is mine. That's understandable, because everything I have is a gift from God, and He doesn't like to see me being selfish with His other children. Beyond that, there is a divine principle at work here. The seed of wheat must fall to the ground and die before new life springs forth (John 12:24). The things we try to clutch to our hearts and keep, we lose. Release them to the Lord and you may be sure that He will restore to you more than you lost. This is the promise of Mark 10:29-30: "'I tell you the truth,' Jesus replied, 'no one who has left home or brothers or sisters or mother or father or children or fields for me and the gospel will fail to receive a hundred times as much in this present age…and in the age to come, eternal life.'"

Early this morning my husband observed me heat a small piece of cinnamon roll in the microwave.Just as I ushered it lovingly to my mouth he said, “Can I have that?”My response was to jam the entire rather large bite into my mouth as quickly as possible.I immediately felt guilt.Later, as I prepared to leave for work, I searched hurriedly for a snack to eat mid-afternoon.I chose a half of bar of dark chocolate and with it in hand I turned to tell my husband goodbye.I felt remorseful over my earlier selfish attitude and apologized for not having been willing to give him my cinnamon morsel, because he would have unhesitatingly given it to me had our roles been reversed. That's what is so funny to him. He is unfailingly generous in such situations while I, the Sunday school teacher and Christian author wannabe, am unfailingly stingy.

His response to my apology was to grin widely and say, "OK, can I have your chocolate?"

The old selfishness caused my face to contort and my hand to tighten onto MY chocolate...and then I deliberately walked forward and placed it on the table before him. He immediately attempted to give it back but I gave him a kiss and nobly said, "No, no, I'm going to be 'big' about this!" And I walked out the door.

When I got to work, I checked my mailbox as usual.My box is high, just above eye level, and I’m used to tugging at the edge of papers and envelopes only to have whatever is resting on top of them shower down around me.I’ve gotten into the habit of pulling with one hand and being prepared to catch with the other.Today when I pulled out the sheets of paper that were in my box a shower of gold wrapped candies fell into my outstretched hand.The local parent’s group had provided treats for each teacher—three mini bars of chocolate.

******Scriptures:"Give, and it will be given to you. A good measure, pressed down, shaken together and running over, will be poured into your lap. For with the measure you use, it will be measured to you" (Luke 6:38).

"Give to the one who asks you, and do not turn away from the one who wants to borrow from you" (Matthew 5:42).

Thursday, January 10, 2008

In the 70's I was a fan of The Carpenters. Their lyrics and music managed to be simultaneously gentle and heart-rending, and served as the backdrop for a number of emotional events in my young life. Their song "Rainy Days and Mondays" was particularly meaningful for my not-yet husband John and me.

When John was a college sophomore, I was a senior in high school. He made the 90 mile trip home each weekend to see me but had to return to school each Sunday afternoon. Mondays were always particularly difficult days for both of us. He longed to be back at home but instead would find himself in a room with 200 other college students listening to a lecture that he didn't want to hear. And, since I had decided that he was the answer to all my hopes and dreams, I would spend Mondays writing his name in the margin of my notebook and wiping away tears. If it would happen to rain on a Monday things just seemed ever so much worse, and in the spring of 1972 there seemed to be an inordinate number of rainy Mondays. The Carpenters' song came to represent longing, unrest and a desire to be anywhere but in the place that life had sequestered us.

This morning I was in my mother's room cleaning when "Rainy Days and Mondays" began to play on her radio. I was in a negative mood, tired of January, tired of awaiting with anxiety the birth of my first grandchild, tired of stressing over a twenty-year-old son, and tired of taking care of my mother. The song reached out tendrils of despair and longing and wrapped them around my heart, and I felt suffused with depression.

And then, like a dash of cold water putting out my self-generated fire of self pity, a thought so clean and clear that it could only be from the Lord spoke clearly, “It is not Monday. And it is not raining."

I am no longer the young girl who believed that a human being could satisfy the longings of her heart. I have learned that God orchestrates all of the circumstances of my life, both those I perceive as being joyful as well as the ones I view as grievous. In my years of walking with Jesus I have found that in every circumstance of my life He provides richly for me, so that with Paul I can say that I have learned the secret of happiness in all seasons.

I am particularly grateful today for His forgiveness for bad behavior because as I indulged in my rainy Monday frame of mind I was unkind to those I love. On a sunny Thursday in this season of my life I choose to praise God for who He is and for the things He has done.

Scripture: I am not saying this because I am in need, for I have learned to be content whatever the circumstances. I know what it is to be in need, and I know what it is to have plenty. I have learned the secret of being content in any and every situation, whether well fed or hungry, whether living in plenty or in want. I can do everything through him who gives me strength. Philippians 4:11-13 NIV

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About Me

If my mom hadn't gotten Alzheimer's, I would never have written a book
for caregivers. If I hadn't lost the reading program that meant so much
to me, I wouldn't have taken early retirement from my teaching job. If I
hadn't already had author status, I'd never have written a novel that
is a tribute to how much I loved teaching kids to read. If God hadn't
kept my heart's needs in mind through the sorrows He allowed, a
traditional publishing company never would have picked up either of my
books. And if I hadn't become overweight, I'd never have learned about God's mercy and grace in a way that would help others and free me from a lifelong case of self-condemnation. I am grateful, and have peace in the understanding that God truly
does work all things together for good.